What Miss Bailey has been up to........

Pretty Nails
Daddy painted the blue and mommy painted the pink!!!!

Tired of sitting in Bed!!

Happy Halloween from
My Little Cone Head

Daddy loves!

The news we have been waiting for!!

Wow has it been a long two weeks in the hospital! I am so happy we get to leave on Friday. Only two more nights!! Yay!! Today is Halloween, and since Bailey can't leave her bed the staff tick-or-treated to her room.  They did an awesome job for all the kiddos on this floor that can't leave.  It is hard to be in the hospital for a Holiday this is the most home sick I have ever been.  It has been a hectic  and hard week. Since the surgery all we do is sit and stare at Bailey waiting for a seizure or watch the doctors parade in and out with no new information. It will seriously make you go crazy. I am officially there!!! I think the nursing staff are counting  down until we leave too! :) But finally after two weeks in the hospital this time and a week in September, so a total of 19 days of testing we officially have an answer!! It is great news! They have found 2 locations that are the  starting points to the electrical storm inside Bailey's head. These two areas are constantly misfiring and always spiking even if she is not seizing.  This is where it all starts, and then within 20 to 30 seconds it attacks the motor area and language area.  The first area is right on the edge of her first resection, and the second area is in the insula, the area beneath the the frontal and temporal lobe. They say that the insula is sometimes one of the hardest spots to find.  Both of these areas are safe to remove however the insula is a little more tricky since it is deep inside the brain. According to the Doctor he will peel back the brain like an orange to get to this area. This part should take around 2hours.  (I am not sure of the total surgery time) Overall everything that has come back is good news. They only obstacle we face is her speech. We are removing around that area and if it has not relocated itself already we will see some vocabulary loss. She might also experience some weakness in her right side. Her speech and weakness will come back with time and therapy. I feel very good about what they have found and all of the testing we have done. They have checked and rechecked to make sure they feel confident this is what we need to do to give Bailey her best chance at life. So now we have scheduled the next Surgery for Dec. 6th. Yep that is right we leave to go home on Nov. 2nd and come Back to the Cleveland Clinic Dec. 3rd for another 13 day stay!!! This is all a little overwhelming so I am not sure exactly how to feel just yet. We are excited that all of the tests show the same spot without any questions. This journey has been such an experience (One I would prefer not to do again) not only have I learned so much about the brain and this amazing Clinic but that when you have to do something you are stronger than you think. I am so excited and extremely nervous for this next surgery. But I know its the right thing to do and the doctors here are amazing!!!!!! I am so happy we adventured out of our comfort zone and came to get a second opinion. This second opinion is going to change my babies life!!!! Thank you Cleveland Clinic!

Our family photos by the Amazing Jennie Lynn!!!

Our Little Family!!!!

http://www.jennielynnphotography.com/Blog/

Surgery Day

Well this day came so fast again! This time Bailey had the SEEG surgery on her left side. We checked into the Surgery Center at 5:30am and by 8:00am the doctors came and took her back. She was so brave and really just slept the whole time we were waiting. She had a long night last night, we stayed up until 11:00pm waiting for daddy to get here!  Bailey is such a daddy's girl and was so happy to see him. She told all of her nurse's yesterday that, "daddy was on a plane, and be here soon." He did get here but it was not easy. Jared's flight out of Salt Lake City was cancelled so he had to take a small  propeller plane to Denver and then a big jet to Cleveland. We were sad it was taking so long to see daddy, but to calm ourselves down we ordered a big plate of Nachos with lots of dips (Dips are Bailey's favorite) watched the Vikings and Buckiners game. Bailey loves football and Hockey. She will sit down and  watch sports with us all day.
I should probably back up, Yesterday they let us check out from the hospital for one night to get a good nights rest and let Bailey run around before the big Surgery. It was such a nice break but made it a little harder to come back in this morning. I kinda just wanted to take my baby and run!!!  But now here we are done with the Surgery and she is awake and doing well. She does not have any pain, she is eating her Chicken Noodle Soup and wanting to run around. She even made friends with her nurse Jason. Only Jason could help her or talk to her, it was so funny!!! Its now 9:00pm and we are slowly winding down for bedtime. Hopefully tomorrow we can get up to the monitoring unit and capture some seizures so we can go home!!!!

Waiting for Dr. Gonzalez

They give you these pagers so you can stay updated during the Surgery

Also they took her down for a CT and X-Ray and they show no bleeding. YAY!!!!! So thankful for Dr. Gonzalez and team for taking such great care of our Little Bailey Bug!!! 

Resting after Surgery

Daddys Small Plane from Utah to Denver
(He said it was not a fun Flight)

Things are going good!! Should have posted yesterday (Wednesday )

Yay for TODAY!!!!!!! Bailey had an Ictal Spect scheduled for Tuesday and Wednesday.  The idea of this test is to inject isotope at the onset of a seizure. Cerebral blood flow is known to increase during seizures at the problem area. For Ictal spect to truly work the injection has to be given before the end of the seizure. It is a hardy tricky test to complete and we were not successful the first day. But luckily Miss Bailey Started having seizures again last night and with a little sleep deprivation  it only took about 30mins and we were done!! It was a huge relief to have that test done and out of the way!!!! The nerve racking part about this test is that we only had  two hours to get a seizure and we only had two days to get it. Now that they have a scan with  with the seizure they will compare it to the baseline scan we did  on Tuesday, and hopefully be able to help pin point the location. I was talking to my mom this morning after all this good news she brought up a good point, no matter what the outcome of all this is at least we know we have done all of the testing and can feel confident with what they tell us. I am not sure if another resection is in her future or not but I am so happy we came to Cleveland and that we came back to finish the last few tests. I hope hope hope we can do a safe second resection and be done with hospitals for awhile, but if that is not the case we at least don't have to keep guessing. Well this has been a good day so far and I hope the good stuff keeps coming!!!!!
                                                           

                       Waking up from the test and starting to feel better after her big lunch!!!

Always being watched!!!

Happy Daddy is almost here!!!

Hi ho, hi ho it's back to Cleveland we GO!!!

We made it safe and sound! So far things have went much smoother than last time. For starters they got her IV in on the first try!!! Last stay it took 8 times. I have been so anxious over that silly IV. You really shouldn't loose sleep over things like that! But they got it and Bailey was so brave!!! It's amazing how brave she really is. She knows Exactly where we are and what they are going to do. They will come in with something and before they can say anything she is telling them what is going to happen.
The schedule this week is not great! Tomorrow we head down for another MEG Scan and then Tuesday and Wednesday we try for a Spec scan. After that she has her MRI Thursday and the SEEG surgery on Friday. That surgery is 5-6 hours long and they will put 10-20 pins in her head. It's not as complicated as the grids like she had before so I am happy about that. After Friday we just watch and wait for seizures and to see where they are coming from. I am hopeful that they can find the location and that it is in a safe area so we can remove it and get our baby healthy!!! The past few weeks Bailey has had so many good days it is hard to think of her as "sick". She is learning and catching up like never before. The only down side to that is, it's hard to make these decisions when she is doing so well. I keep asking the doctors over and over "this new pill I think it worked, do you think they  will be gone for good?" of course they never know! That is the worst part of this disease, it's unpredictable and nobody can tell you really why or where. It's always a guess, they are educated guesses but still a guess. They always tell us her seizures go into a "honeymoon" phase and will be back. Chances of finding a medication that will work or be that "miracle" drug is less than 5%. So that is why we are here and going forward. Just a few more tests and we will have our answers. We are so close!!!! I am going to say a little prayer that she will have a few safe seizures each day so we can get our answers. I will keep you posted. Good night!!

We are back and going again!

I did not even get the bags unpacked and they are telling us to go back! So back to Cleveland Bailey and I go for another round of tests!! Except this time I have to go without my awesome hubby and we will be gone for TWO WEEKS!!!! All I keep saying to myself is " I can do this, deep deep breath!" I know we will be just fine once we get there, its the traveling by myself with a three year old that makes me worried. I never travel so the airport is all foreign to me. I guess when you are thrown  into a situation like this, you learn really really fast!!! And if all else false I will just start to cry and someone at the airport will take pity on me and show me the way. With that said I will get down to the real reason why you are probably reading, not just to hear me gripe about traveling, but about my precious baby! Yes she will always be my baby! (I always say "my baby this, my baby that," and then when I tell people she is three they look at my funny.) Bailey is doing great. Her seizures are not gone but under control and for the most part only happening while she is sleeping. So thankful for the new medication Carbamazepine. It even comes in a chewy pill and she loves it!! We stopped using the depekote because she spit it out so often that it was not at a therapeutic level. So now she is only on two medications! Oh that makes me happy!!! As most of you know we went to Cleveland in September. We have been told so many wonderful things about the hospital and team there, we were excited to go. I don't think it was our last ditch effort to fix this but we are getting really close. We arrived and it was nothing like I thought it would be. It was much worse. I am so not a fan of Cleveland Ohio!! But it does not matter what the city looked like, if the doctors are great then we will go and go again. We met with Dr. Lachhwani on Monday. He was kinda and soft spoken. Spent almost an hour listening to our story and at the end of the appointment I felt relieved we had finally met the doctor we heard so many good things about. He speaks with a confidence I have not heard before. He does not promise miracles but tells you like it is. That is something I have come to appreciate. I need real answers not made up ideas or "we think". After our appt. with him we went and checked in. We were admitted to the 5th floor. It is the monitoring unit. It was nice to be with families facing the same challenges we face and dealing with nurses who know what to do if she has a seizure and not be afraid of them. Once we checked in that is when "hell week" started!! First was the two hour neuro psychological evaluation. We were supposed to go in for the PET scan on Tuesday but for some reason the nurses there could not get an IV in. They tried 8 times before they finally got one in. It was so hard to watch them try for three straight days. Bailey was so terrified and is now scared when it comes to needle. So because they could not get the IV in we had to cancel our tests on Tuesday and push them to Wednesday. She the MEG scan in the morning and then the MRI at 2:00pm. Poor baby did not eat breakfast or lunch on Tuesday, Wednesday and Thursday. On Thursday morning she had the PET scan and then we met with our doctors Friday. The bad news is the MRI scan came back clean. That was the big one!! We were praying they would find a malformation or something pointing them to the trouble spot. But everything came back clean. SO here we are going back for more tests! The next round of tests consist of a Spec Scan, EEG monitoring, MEG scan and another MRI.We are also going to do a SEEG. That is a Stereoelectroencephalography. I don't know how to better describe it than copy what the Cleveland Clinic says. It is an invasive surgical procedure that is used to identify areas of the brain where epileptic seizures originate. With SEEG, doctors place electrodes in targeted brain areas, which are then monitored to precisely locate seizure source. When the seizure onset is localized, a surgical resection and a good seizure outcome may be possible. 
I am excited for this test and feel its a great way to look at things and not have to open her skull up again. Well that is about it for now, we went for a week and still don't know much! Ready for some good news!! I hope everyone has a good night and thank you for taking your time to ready about my little bug!!